View Full Version : Another newbie from england!
01-18-2008, 06:58 PM
Hi all, just wanted to introduce myself really. I'm Kelly and from Exeter in England. My daughter Jasmine is 15 months and has metopic cranio, she is scheduled to have an operation next month on the 19th February at Great Ormond Street Hospital in London. I first noticed a ridge on her head when she was around 5 months old, although looking back on photos now it is apparent from when she was about 2 months but we didn't notice it at the time. It sounds stupid now but we didn't think the ridge was anything to worry about, we thought that it was just the shape of her head. Over the next few months it gradually got worse and one day I typed "ridge on head" into google and found out about craniosynostosis. I looked at photos of other babies and I knew then that it was likely she had metopic cranio. We made an appointment with our doctor who referred us to a local paediatrician, he diagnosed her as having metopic cranio and referred us on to see Professor Hayward, who is a surgeon at Great Ormond Street. He told us she has a mild case of metopic synostosis and trigonecephaly and that it was up to us whether or not we wanted to go ahead with the operation for 'cosmetic' reasons. At first when he told us of all the risks our inital reaction was that we didn't want to put her through it, but over the next few weeks we thought about it a lot and have decided that it is the best option for her and we think we are doing the right thing... So fingers crossed it will be fine, it's really reassuring to read other people's posts and seeing photos of how quickly other kids have recovered gives me hope.
01-18-2008, 07:06 PM
Welcome to cranio kids Kelly...ther are a ton of "metopic" mommies on here, my daughter had surgery for metopic On Sep/26...she did great. You'll get all the support you need on here..there all lots of mom's from the UK on here.
01-18-2008, 07:28 PM
Welcome! I am another "metopic Mommy" LOL My daughter Azia had surgery 3 months ago to fix her metopic cranio (she was 8 months old). This is a great support site!
01-18-2008, 07:50 PM
Welcome to the site, Kelly. Good on you for diagnosing your daughter. So many of us on this site have had to the same thing. My 6-month son, Nicholas, had surgery for metopic cranio just last week and he is doing great. Jasmine will do great as well and will recover faster than you can imagine. The surgery will be harder on you than on her. Please keep us updated. Do you have any pictures you can post? We'd love to see pictures of your little one. :-)
01-18-2008, 08:09 PM
My son is also metopic and is having surgery on Feb 19th...same as your daughter! I think you guys are about 6 hrs or so ahead...so technically, you'll go first!
I know how hard it is to make the decision. Our son's case is considered mild too, but we were told it would be best to operate due to the trigonecephaly...metopic closure without trigonecephaly often do not need surgery, as I am sure you know!
Fell free to ask any of us questions...there are a lot of parents who have been through it before!!
Nice to meet you!
01-18-2008, 08:11 PM
Welcome to Cranio Kids! My son Wyatt also has metopic cranio and will have surgery on Feb 27th.
You will find answers to so many things on here and you will also find a lot of support and great people!
01-19-2008, 03:48 AM
Hi Kelly, wow yet another uk mum, welcome to cranio kids, i think you have made the right decision for Jasmine, its probably one of the most difficult you will ever have to make. My Bradley is metopic too and he will be 3 on sunday, he is having surgery done at the JR in Oxford on valentines day, February is going to be a busy month on here as there seems to be a lot of surgeries happening. We are all here for you, there is a fantastic bunch of mums here, and dads of course, so welcome yet again, have you been onto the uk support forum yet, Headlines, it has some great info.xx
01-19-2008, 04:50 AM
Welcome to Cranio kids,
My little boy Beau is 4 1/2 months he will be having his saggital cranio surgery at Great Ormond Street with Professor Hayward as well, on the 28th of Jan.
You are in great hands... Great Ormond Street Hospital has been absolutely marvellous. I cannot fault them in anyway.
We were told that Beaus is cosmetic also but we knew before wed even seen the doctor that Beau was definately going to have the operation.
Theres another mum on here called Nicola whos daughter Rose also just had her operation for Saggital a couple of weeks ago at Great Ormond Street by Professor Hayward i know its a different procedure but the cut is still across there head ear to ear, Roses scar is amazing. Thats one thing i was worried about how the scar would look but it really does look brillant. She looks so different. It gives me comfort that im doing the right thing.
Im sure if you ask nicola to send you some photos then she will. The difference in Roses head actually the difference on all the childrens heads who are post op on Cranio Kids are truly amazing.
When i find im down or a bit upset i just log on to cranio kids and to see the pictures of the children before and after and realise im doing the right thing.
You have found a wonderful site in Cranio Kids..
Feel Free to ask any questions... Good Luck.
Love Laura....8 days till operation for Saggital...
01-19-2008, 11:20 AM
Hi, thanks for all your replies. I've attached a few photos of Jasmine below. From the front it is quite hard to see anything wrong, but it is more noticeable from the side and a birds eye view. When we first noticed it all she had was a ridge but that seems to have pretty much gone now and her forehead seems to protrude more. Also she didn't have the trigonocephaly at first, just the ridge, and the trigonocephaly seems to have happened gradually over time.
I keep reading about people having CT scans, is it normal for everyone to have a scan because when we went for our appointment it wasn't mentioned to us at all. I did mention to one of the nurses on the phone about possible pressure, but she said it is very rare in metopic cases. Is that true?? I can't help but worry! Although she is having the operation next month anyway so I suppose if there is any pressure they will find out then...
I have joined headlines, they've sent me a load of info through the post, but I haven't had a chance to read through it all yet, it seems really helpful though. It's also nice to know there are other mums here who have the same hospital as me. Laura i'd love to hear how you get on with Beau, I have found the staff to be lovely and the hospital has an excellent reputation so i'm sure we're in good hands.
Anyway really nice to meet you all, look forward to chatting some more.
01-19-2008, 07:38 PM
Hi Kelly, I only pop in from time to time, and in the time I have come in I am so glad to have found your post. I am from Barnstaple North Devon so only up the road.
Jack had surgery in 2005 for Bi-coronal, in Oxford. I also am a member of Headlines.
I would ring Gil just to check your concerns about no CT scan being done as far as I am aware it is compulsory. She will be able to find out for you.
Would be nice to maybe meet up if you wish. I also have a friend here where I live with Saggital, he went to Oxford too.
Good luck and be great to hear from you xx
01-20-2008, 09:17 AM
Hi Kelly, welcome to Cranio Kids this is a fantastic place. Your daughter is beautiful. My son Charlie had surgery for Metopic cranio at Oxfords John Radcliffe when he was 14 months (he's now 18 months) and he has just amazed us how well he got through it. It's so much tougher on us parents than on the little ones but Jasmine will amaze you she really will. I wish you all the luck with the surgery, please keep us updated & ask as many questions as you like there's always someone willing to help xx
02-05-2008, 04:40 PM
Sorry to have missed your post, I too want to welcome you and offer support. My son David had surgery for Metopic in December. He is doing great. Please don't hesitate to ask if you have any questions. We'll be thinking of you.
02-05-2008, 11:33 PM
Kelly, I've got a Sagittal babe, but I knwo there are a lot of Metopic moms here that can give you great advice!!! Welcome!
02-06-2008, 12:04 AM
Kelly- no, CT Scans do not have to be done. Our surgeon perfers to diagnose without CT Scans if he possibly can to spare kiddos from radiation. We had already done a CT Scan on Quintin before we found our surgeon.
Your daughter is a cutie. I see the ridge...I am glad you are having the surgery done for her! She will thank you when she is older!
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